Of course, scoliosis makes things trickier, and we had pro-disc discussions here many years ago. Some have had single pro-discs installed under fusion masses in the lower lumbar....This doesn't seem to have taken off...

Now, using pro-discs with tethering is quite a concept. If they could control the tension of the tether using a device like Magec, that might be an idea worth some thought. Possibly multiple tethers?

Ed

06-04-2017, 10:27 PM

Pooka1

Ed, what I don't understand is why tethering to include the lumbar wouldn't cause flatback and why it wouldn't cause hypokyphosis in the thorax. If it is tight enough to straighten the curve in the coronal plane then it must be tight enough to straighten the curve in the sagittal plane. If tethering doesn't pan out I suspect this will be the reason.

You know materials. What do you think about the possibility of the tether only working in one plane? I cannot imagine how that is physically possible.

06-05-2017, 12:00 AM

richardis

Quote:

Originally Posted by Pooka1

Nobody would want to return to the previous state. I don't think a surgeon can justify another operation ethically.

In terms of technical feasibility, if they didn't remove the discs, I am not sure why the fusion could not be revised. Maybe Linda knows.

This is simple: If they cut the bones again why would the bones be motionless? They may not be moveable by the innervation coming from the mind. But if other people moves the bones mechanically to you they would certainly move. Fact.

I would want a full mobile spine and a scoliosis-free spine? If someone doesn't, please raise their hand up.
The doctors do their own code of ethics, only the GOV can impose revisions, usually by demand of the people (democratic voting system) . But, ultimately, the life is yours, the code is theirs.

We know how to conceive an healthy-baby, right? We know how babies grow with straight spines. So why can't we crack the code? the question is: what went wrong? Don't tell me it is impossible.

Give children who suffer from scoliosis the opportunity to go to medical school and to be a researcher. That way, I am sure we would have already discovered the cure. Doctors' areas of interest or research are usually related to their own health-problems or to the problems of their loved-ones. That is the way the world works.

06-05-2017, 12:43 AM

titaniumed

Sharon, I don't see why you couldn't pull in any direction or plane you want, provided you were using "multiple" tethers. Multiple tethers using a device to adjust tension, would be an improvement.. One tether pulling down on a corkscrew is hard to control. Computerized tethering with tension adjustment would allow for daily bending and re-tighten up to straighten the spine while sleeping. You can do this adjusting like Magec with software, after periodic x-ray to decide force or adjustment.

Like a slinky....remember those? Controlling them was almost impossible.... balancing them in the palm of your hand? Well, that was a fast result and the scoliotic spine is a slow result with minimal unknown force parameters.

None of these things that involve hardware are easy. The future will not include hardware, it will be through genes. Gene therapy. Linda has mentioned this.

Mark Zuckerberg wants to cure all disease by the end of the century. When I watch him on video, the excitement is contagious....and that's what it takes. Its a challenge for the younger generations to dream, and its that kind of excitement that influences people. FB is a powerful organization....

Did the car companies waste their time by improving gas mileage when we could have pushed for electric vehicles decades ago? Now that the environment is now an issue? Emissions and pollution started a really long time ago so I guess it really was a waste of time. Spinal hardware is the same thing. If we could simply go to the next chapter, that would be best, but things are never that easy.

The software programmers are going to have to figure out how to analyse all the data. They will do it, I have no doubt, but its not going to happen quickly. (smug face)

I also wonder when they will tether the 1st kyphosis patient? For adult 100 degree kyphosis, they would probably have to use 2 parallel tethers and drive the screws in the pedicle's.

Ed

06-05-2017, 04:58 AM

richardis

Quote:

Originally Posted by titaniumed

straighten the spine while sleeping. You can do this adjusting like Magec with software, after periodic x-ray to decide force or adjustment.

. When I watch him on video, the excitement is contagious....and that's what it takes. Its a challenge for the younger generations to dream, and its that kind of excitement that influences people. FB is a powerful organization....

Ed

Hey, Ed!
great contribution. Can you post the link of the video?

Regarding the growth while sleeping, according to my research melatonine and growth hormone are inversely related, which means that sleeping has a negative or strange relationship with growing. Melatonine issues is being studied as a possible cause for scoliosis.

Sharon, I don't see why you couldn't pull in any direction or plane you want, provided you were using "multiple" tethers. Multiple tethers using a device to adjust tension, would be an improvement.. One tether pulling down on a corkscrew is hard to control. Computerized tethering with tension adjustment would allow for daily bending and re-tighten up to straighten the spine while sleeping. You can do this adjusting like Magec with software, after periodic x-ray to decide force or adjustment.

Like a slinky....remember those? Controlling them was almost impossible.... balancing them in the palm of your hand? Well, that was a fast result and the scoliotic spine is a slow result with minimal unknown force parameters.

Ed

Thanks for these comments. I agree you are probably going to need multiple tethers to counter straightening the spine in the sagittal plane.

"One tether puling down on a corkscrew" is a perfect description. All AIS has a rotational component. When you apply force on one side of a typical AIS curve, I am not grasping how that magically ONLY reduces the curve in the coronal plane and does nothing in the sagittal plane. I imagine there would be some improvement in the transverse plane.

Potential advantages of tethering as explained to the family include maintenance of flexibility within operated spinal segments, preservation of at least partial growth within those segments, growth modulation leading to correction of vertebral body wedging, and the potential to decrease adjacent segment degenerative disease over time.

Unknowns and concerns with the procedure include the potential for fixation failure or cord breakage, overcorrection through growth modulation in a skeletally immature patient, and disc degeneration within the instrumented spine.

Note the possibility of disc degeneration within the tethered area. This is analogous to flatback with the H rods due to the hypokyphosing when you have one element to straighten a "corkscrew". .

Computerized tethering you say. I think we need the IOT of scoliosis tethering. :-)

06-05-2017, 07:11 AM

flerc

Quote:

Originally Posted by Pooka1

Nobody would want to return to the previous state. I don't think a surgeon can justify another operation ethically.

Nobody in scoliosis forums since years ago may believe that nobody would want to returm to the day they had fusion and refuse it so of course reversing it would be ethical.

06-05-2017, 07:41 AM

Pooka1

Quote:

Originally Posted by flerc

Nobody in scoliosis forums since years ago may believe that nobody would want to returm to the day they had fusion and refuse it so of course reversing it would be ethical.

This is magical thinking.

If everyone would reverse their fusions then why does anyone ever get a fusion?

Your comment makes no sense. People are fused for a reason.

06-05-2017, 08:54 AM

richardis

Quote:

Originally Posted by Pooka1

This is magical thinking.

If everyone would reverse their fusions then why does anyone ever get a fusion?

Your comment makes no sense. People are fused for a reason.

How can people know what a fusion feels like until they do it? Pooka, no one knows what it feels like until they experience it by themselves.

06-05-2017, 11:10 AM

flerc

Quote:

Originally Posted by Pooka1

This is magical thinking.

If everyone would reverse their fusions then why does anyone ever get a fusion?

Your comment makes no sense. People are fused for a reason.

What you call magical thinking is in fact rational thinking. Nobody with that kind of thinking could find some sense in what you are saying, is like to ask why people married may wants the divorce. Absolutely absurd of course!. Do you need more examples? Anyone may give you infinites like this.
But certainly is impossible for me to conceive a mother of 2 daughters fused seeing as a nonsense and non ethical the possibility of reverse fusion.

06-05-2017, 11:41 AM

Pooka1

Quote:

Originally Posted by richardis

How can people know what a fusion feels like until they do it? Pooka, no one knows what it feels like until they experience it by themselves.

People get fused to stop progression or pain. If their fusions were reversed, their curves might continue to progress and compromise their health or kill them. My one daughter would probably be dead now if she wasn't fused for example. She certainly would never have finished high school not to mention gone to college with her unfused curve.

For the small percentage of people who have the same or more pain after fusion, it makes sense that they would want to reverse it. But for all the people who have less or no pain, obviously they would not want to reverse it. And even the people who have more pain with fusion might have been in even more pain eventually if they weren't fused.

In terms of what it feels like, I can only report what my daughters tell me. They say being fused isn't that much different from having a large curve in terms of ROM. So it isn't like they notice a big difference before and after fusion per their reports. That's when I realized that just having a large curve cuts down the ROM.

06-05-2017, 11:47 AM

richardis

Quote:

Originally Posted by richardis

you are correct. Anyway, the FDA has approved fusion and as every institution created by humans it is fallible. So the FDA must revise its position about spinal fusion.

Both the SRS ( international society), and the FDA ( US-based) must intervene or revise their guidelines. The FDA is not 100% trustable, although it is the most trustworthy institution out there, but it is its mission to be as exact as humanly possible. They should address this ASAP. Can someone do some internet research about spinal fusions and the FDA position about them and post it here?

Who funds the FDA? The government (taxpayers?)? What are the FDA ties with industries? what are the criteria to attribute grants? who pays for that? What are the benefits that someone gets from an FDA approval? There are a lot of questions who remain unanswered.

why are grants attributed? What are the motivations that drive doctors or researchers to study scoliosis?
Patients who suffer from scoliosis are for sure the most motivated to find a cure, but why would someone who does not suffer from it choose to make a career out of it?

We, as patients must lead the way, we have the future on our hands. We need to make sure that some part of the budget of the government goes directly to research in spinal conditions. No one cares more about your health than you. Top specialists should be incentivized to study scoliosis or dedicate a career to it. The problem is not easy to solve so they will steer away to more risk-free careers in different fields of medicine.

Scoliosis is mostly studied by non-profit or private institutions. Why does the government fails to give resources to the advancement of our understanding of scoliosis? Private medicine is poorly regulated so we are susceptible to scams ( I don't know the reality that well in the USA, but my undestanding is that the GOV can only sue doctors due to malpractice and they hand over the healthcare to private practitioners who should follow certain rules). Those rules are easily broken ( because the GOV has no way to trace and make a clear track record of what and why a doctor choose to submit a person to some treatment. In fact, some doctors just pass the burden to the patient, making them sign an informed consent so they can wash his hands away from some possible complications or unexpected/unsuccessful outcomes) . But we owe more to private efforts. We are a small niche in the market, so the gov is mostly lobbied by groups of people who suffer from more common diseases. They are more profitable to doctors. Sad but true.

I told you so. Smart UP. https://www.statnews.com/2017/06/05/...arthritis-fda/
Healthcare is a business, after all. Doctors are losing credibility as credible information is spread to the general public. This is utterly upsetting. Doctors have no autonomy and rely on and comply to the orders of its superiors. They are puppets on the hands of drug companies in which they rely on to prescribe their RX. If they break the rules or don't get any profit to please the shareholders of private hospitals or even state-run hospitals they will get fired.

06-05-2017, 12:55 PM

flerc

Quote:

Originally Posted by Pooka1

People get fused to stop progression or pain. If their fusions were reversed, their curves might continue to progress and compromise their health or kill them. My one daughter would probably be dead now if she wasn't fused for example. She certainly would never have finished high school not to mention gone to college with her unfused curve.

For the small percentage of people who have the same or more pain after fusion, it makes sense that they would want to reverse it. But for all the people who have less or no pain, obviously they would not want to reverse it. And even the people who have more pain with fusion might have been in even more pain eventually if they weren't fused.

In terms of what it feels like, I can only report what my daughters tell me. They say being fused isn't that much different from having a large curve in terms of ROM. So it isn't like they notice a big difference before and after fusion per their reports. That's when I realized that just having a large curve cuts down the ROM.

About ROM I'm absolutely sure that it would be impossible to dance as my daughter danced all these years until she had an accident nothing having to do with this.
But of course is probably what you said and nobody may say that you didn't take a reasonable decision; scoliosis vicious cycle during growth is devasting in some cases and something too much blunt is needed to stop it and Vbt did not exist in those days.
But after growth is different. Sure that nobody reversing fusion could die because a terrible progression..except if muscles/ligaments would not be the same, but anyway having Vbt it should not happens.. or does Vbt like Spinecor also need soft tissue to hold the spine straight?.
Sure that nobody may be absolutely sure what may wants someone after decades, so sure for everyone who had fusion or their parents, the possibility of reversing it, should to be a good news!.

06-06-2017, 06:44 AM

Pooka1

I just spoke to my daughter who is doing a very physical internship out west in fisheries biology. She is in a stream every day, rowing boats, toting gear, etc. etc. I told her about this thread. She AGAIN said she feels completely normal. She does not feel any restriction or loss of ROM.

As I mentioned previously, a few years ago when she said the same thing, I asked her to bend in all directions. She has normal ROM front and back. Her side to side is less than mine but she does not perceive that as any different than before her fusion. That's when I realized people will big curves do NOT necessarily have normal ROM and what they do have seems completely normal to them. That's why the fusion changed nothing for her in terms of her ROM.

The bottom line is she has not had a normal ROM since at least a year before her surgery and she apparently doesn't remember what that was like. But if you don't remember what it is like since before your surgery, and the fusion doesn't change that lower ROM much, then you aren't going to register any issue with lower ROM. My daughter didn't realize she had a lower than normal ROM side to side until I showed her my bending side to side. But she can't relate to ever doing that so she feels normal.

When people without scoliosis think about this issue, they need to consider that normal is off the table in so many ways. The baseline is NOT necessarily normal ROM. If your baseline is something less than normal ROM, it is possible that a T fusion will change nothing as for my daughter.

Assuming the baseline for a person with a large curve is the same as for a normal person is just magical thinking and adds to the level of "fake news" that goes on so much on this forum.

06-06-2017, 01:22 PM

flerc

Quote:

Originally Posted by Pooka1

That's when I realized that just having a large curve cuts down the ROM.

This is an absolute and general sentence, so it would be valid (if it would be true) for everyone having a big curve, as my daughter has. So I said this 'About ROM I'm absolutely sure that it would be impossible to dance as my daughter danced all these years until she had an accident nothing having to do with this.' And I'm really absolutely sure about this because I have seen her dancing many times, which is the problem?. Where do you a see a "fake news"? as also in other posts you are saying I'm posting here? If you would be a good person you would have asked about the accident I commented instead to trying to accuse me about.. what? Do you want to see "fake news"? Read most of your posts!. Do you want me quoting much of them? Just only ask me.
And certainly this is sure also magical thinking for you https://www.ncbi.nlm.nih.gov/pubmed/16449904